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C5-C6 issue affecting my shoulder?

Spine Health | Last Active: Feb 29, 2020 | Replies (42)

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@fdchik22

Wow that sounds like a dream situation with the doctors I mean it sucks that we're both in a situation where we need them but good there is actually compassion in doctors still. I'm very sceptical these days because of how many different neurologists and neurosurgeons I've seen that have just pushed what I've said to the side. For instance the neurosurgeon I've been to recently has had my MRI results for over a week with no communication from his office other than I'm on a list for him to review. I understand everybody's busy but I've expressed several times that I can't live like this and nothing changes. VERY FRUSTRATING!! How long does it take to know if your approved to be seen etc? How's the process work exactly??

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@fdchik22 Everyone at Mayo has a lot of compassion for patients. It's actually written in their job listings and it is true that they attract good people. One thing I ran into before I came to Mayo was doctors who were dismissive and nurses of surgeons who were hostile toward me and all of that was because no one was connecting the real symptoms I had with my spine issues. One nurse in particular was refusing to schedule appointments for me because she was protecting the doctor's time, and she didn't regard my case as serious. As I reported things getting worse, and getting vertigo intermittently, the surgeon made a decision not to offer surgery because he thought it would be a lot to put me through and wouldn't help my bigger issues. Apparently he didn't know about "funicular pain" caused by spinal cord compression that sends crazy pain all over the body, and it isn't a nice presentation of pain according to a dermatome map. Compression at nerve roots will follow that, but spinal cord compression is a different game. If they don't understand why you have symptoms, they don't have the confidence to help, and you wouldn't want a doctor like that. They are rated in the number of successful procedures they have, and why risk your reputation on something you don't understand? It's a lot easier to choose patients with straightforward cases that you know will be successful. Mayo is known for taking more difficult cases, and it may have helped me in my acceptance because 5 surgeons turned me down over 2 years time and would not operate after they learned more about my symptoms. My MRI was obvious spinal cord compression, but they didn't want the other possible complications.

When I called Mayo in 2016, they said it was probably a 3 month wait to get an appointment after a review of my records and imaging. I had requested that Dr. Fogelson review my case and I chose him because I knew he would understand funicular pain because I looked that up after reading medical literature he co authored. I knew I had found a surgeon who would understand my symptoms, and his areas of interest was a good match, and he can do artificial discs or fusions for cervical issues. A lot of times, you don't know what a surgeon prefers ahead of time until you see them, and a lot only did fusion. It all depends on what they have been trained to do and what manufacturers they work with. When I inquired about him, they told me that patients really like him, and I was a scared patient, so that sounded good. I actually was called for an appointment a month after they received my imaging because he had a cancellation, and I got a short notice of a week to get there, and I jumped at it. They scheduled 2 days of testing and appointments, and I met Dr. Fogelson the 2nd day. I did have to return a week later for an MRI to cover the entire spine, because I had an art show opening I wanted to attend on the weekend. I also had a followup with the neurologist that same day and he reviewed the new MRI with me, and also talked about a counseling program they have for patients to deal with pain. Dr. Fogelson offered surgery to me at my first appointment on day 2, and he couldn't promise it would solve the funicular pain, but he would help me anyway and I had surgery about 5 weeks later. I could have been scheduled in 2 weeks because mine was a smaller surgery that was easier to fit in, but I wasn't ready at home. I knew that this surgery would solve my pain because I tracked my symptoms as they developed and this pain was variable and reproducible because of my neck position and how I turned my head at least in the beginning. By the time I had surgery, it had advanced enough I could bend my neck and send an electric shock down my body. I was told he would do 2 smaller surgeries a day, or one complex bigger one. My surgery was 2 hours. In comparison, one of the prior surgeons I saw before Mayo did about 10 cervical surgeries a day in 30 minute procedures at their privately owned surgical center. I wanted a doctor who took more time and precautions like neuro-monitoring.

Personally, I really liked Dr. Fogelson, and he liked my artwork. I had been used to surgeons turning me down, and I brought a painting with me to show him what I needed to be able to do because I had lost the ability to control my arms and the strength to hold them up. When he said he wouldn't mind having something like this in his house, I told him it could be arranged and we all laughed and that's how it began. He is a guy who loves his job and that was important to me too. As a patient, I arrived with a sense of hope and a list of intelligent questions that I compiled because I had already learned a lot about spine surgery. That understanding let us converse in detail about my case and how his surgery could help. I asked about having a fusion without hardware and I thought it was an option because I had read that in one of his papers that a single level fusion could be done that way, and I promised him I would stay in a neck brace until it fused which he said would be about 3 months. A lot of surgeons who saw me before Mayo had very specific ways they worked and specific hardware they installed with plates, cages, etc made of PEEK or titanium. At Mayo, I felt I had a choice in what I asked my surgeon to do. It is their mantra that the needs of the patient come first, and my request was granted. I knew that some patients had allergic reactions to these materials because I had read research about this, and since I had issues with metals in earrings, I wanted to avoid foreign materials placed on my spine. Dr. Fogelson said it heals best with just a bone spacer. One of the prior surgeons I saw refused to test me for possible reactions to implant materials and I paid out of pocket and did that anyway with my PCP. That isn't foolproof because you can develop a problem later down the road, and I didn't want any re-operation due to possible hardware failure or incompatibilities. Anything screwed into the spine has the potential to fail if a screw breaks or backs out, or if the bone quality and placement is not sufficient. If that is hardware in the lumbar spine, it's even more important because of all the pressure of weight bearing, and the screw placement and angles are very important, or the screws can pull out in a hardware failure.

When you come to Mayo, start fresh, and leave all your frustrations from prior specialists behind. It really is different and refreshing and they want to help. I didn't know medicine could be like that. You do have to come with a desire to be well and to let your specialist work out the issues and provide the answers. Mayo will redo tests like EMG/ nerve conduction because they do it a little differently, and Dr. Fogelson requested this before my consultation, and also an evaluation of my thoracic outlet syndrome which has overlapping symptoms with spine issues. No surgeon wants a patient to come in and tell them how to do their job, but it is OK to ask why one procedure is preferred over another and what other options there are, and what are the predicted outcome of success that relates to your case with any other health problems that you have. They should be willing to explain this while showing the problem in the imaging. Dr. Fogelson did that for me, but some of the prior surgeons I saw only wanted to look at an MRI by themselves and not explain it to me. I think it will be different for you if you come to Mayo, as long as you come with respect and wanting to heal. It really can be wonderful and compassionate. That is what I found after years of my frustration. I have a lot of patience and I researched and advocated for myself. I wish I had come to Mayo first, and having a really compassionate surgeon helps a lot. I did my part too to be friendly and engaged and interested in my care. Mayo is my happy place now, and I really enjoyed coming back at my one year followup and then another year later to deliver the portrait I created for Dr. Fogelson. I had fun enjoying the piano music in the atrium of the Gonda building and dancing with other patients, and if I lived there, I would want to work for Mayo. It means a lot to me for what I received as a patient, and that is the reason I'm here on Connect, because I want to help other patients who are on a similar journey. To me this is inspiring as to what is possible in health and healing and my personal journey overcoming an injury and returning to my ability to work again as an artist.

If you look at the first page of this discussion, there are photos of Dr. Fogelson at my one year follow up when he saw his portrait the first time. The frame was damaged, so I had to return later after getting a new custom frame made. It meant a lot for me to do this for him and to prove to myself, that after surgery and rehab I could paint again at a level I expected of myself.
https://connect.mayoclinic.org/discussion/art-for-healing/